Cecil was very labile in the ending of July to beginning days of August, on HFOV (High Fregquency Ventilation) requiring high Fio2 and Delta P up to 48;weaned off NO (Nitric Oxide). Albuterol and pulmocort added were added to his IV medications. Respiratory status improved after starting low dose dopamine drip to keep systemic blood pressures above the pulmonary blood pressures, which significantly helped him to wean in his oxygen requirements from 70-80% to 25-35% which was great news, he was now requiring much less oxygen than before. the settings were changed from HFOV to SIMV. SIMV is still on the same machine but lower settings, therefore it is no longer doing the breathing but "assisting" with his breathing. He had less fluid in the area of his left lung.  

        He finally came off his sedation with versed drip , Fentanyl drip transitioned to Methadone PO meaning it is given orally, through his feeding tube.

         August 11 2015 to August 27 2015 he was on full feeds.Mild to moderate cholestasis stable, improving. He was cruising towards extubation (the pulling out of the breathing tube from his throat) until August 27 2015 AM , when he started showing signs of sepsis which is the presence in tissue of harmful bacteria and their toxins through infection of a wound. He was initially started on oxacillin and tobramycin, switched to Cefepime on August 28 after they did the blood culture and found out the specific type of bacteria and changed medication to attack that specific class. The bacteria grew on the PICC line which is another version of IV or central catheter but placed more deeper into the body direct to the vein and is best for extended antibiotics. The PICC line was pulled out on August 28. Transiently switched back to Fentanyl.

       Throughout this time we had great news with his respiratory system, the only issue was his feeding intolerance. As stated before the surgeons cannot place the bowel exactly as it was so their is risk of aspiration (vomiting) while eating, CK ate through ah tube but still had to digest the food and pass it out, his body was still responsible to do the bowel movement process.
He had abdominal distension and aspirates, his distension led to the doctors to stop the feeding and simply air our his tummy, they decompressed the air out and the excess fluid. Now we are caught up with the problem of his bowel not being normal, him not being able to eat, which would mean slower progress. Food gives nutrients, yes he was on vitamins via IV but nothing replaces food.
      After having such great progress with this respiratory system then have a fall back with his feeding was heart wrecking for me, I had hopes of being so close to the end. The nurses thought maybe he needed mommy's touch and warmth and they decided to have me hold him for the first time. Tears of joy but yet hurt on the inside to hold him with so many wires and tubes, unable to turn him around, kiss him, shake him or nurture him. I simply had to sit with him in my hands and stare at my little creation and of how innocent he was to be going through all these horrible aches.

      Some days were good news, some days bad news, other days little of both. Nothing changed the confusion in my heart and mixed emotions of "when will this be over?" "when will i be able to hold my little one and take him home?".


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